Rone-Adams, Shari A. PT, MHSA, DBA; Stern, Debra F. PT, MSM, DBA; Walker, Vicki MPT
Caregiver participation in the rehabilitation process is important to the rehabilitation of children with disabilities. Research has shown that parental involvement improves the child's outcomes, and the practice of incorporating home therapy programs has increased over the past few decades. 1–3 A variety of environmental causes have contributed to the need for the incorporation of home therapy programs. These include but are not limited to an increased number of uninsured families, decrease in governmental funding, managed care, and other changes in reimbursement structures.
Studies suggest that caregiver involvement in therapy can be a cost-effective technique for expanding physical therapy to disabled children. Involving parents in intervention programs has been shown to speed the achievement of goals and increase the likelihood of obtaining improved motor functioning in physically disabled children. 2–4 Gross et al 4 conducted a study in 1982 that examined the effectiveness of training parents of physically disabled children to perform physical therapy at home. The authors suggested that the involvement of parents in physical therapy can be a crucial variable in increasing the likelihood of obtaining improved motor functioning in physically disabled children. 4 The results of their study also suggested that parent training is a cost-effective technique for expanding physical therapy to disabled children.
In 1999, Pelchat et al 5 conducted a longitudinal study of the effect of early intervention programming for parents of children with conditions such as Down syndrome and cleft palate. The study indicated that early intervention programs lowered parental stress, increased positive perceptions and attitudes toward their child, and increased their confidence in their own resources. Other reports also support these findings. 3,5,6
Although the importance of parental involvement in therapy treatments for disabled children is supported by research, compliance with home therapy programs remains a problem for many parents and rehabilitation professionals. It has been estimated that as many as 50% of parents do not comply with prescribed therapeutic regimens. In fact, failure to comply with intervention recommendations and home programs has been called the best documented but least understood health-related behavior. 1 Because parental involvement is so essential, it is important to look at parental compliance with home therapy regimens. Noncompliance with medical regimens has been estimated to range from 5% to 94%, depending on the population studied, the method of data collection, and the treatment prescribed. 7
Noncompliance has been identified as a factor affecting treatment outcomes. 7–9 Compliance has been shown to be lower when the child's disability is chronic. Compliance can also be affected by the complexity of the prescribed regimen, the child's age, and the family's lifestyle. 1–3 Studies have been performed to determine the factors that influence parental compliance. The factors studied have included age, race, religion, marital status, socioeconomic status, and family size. However, none of the studies have found conclusive reasons for compliance or lack of compliance.
One factor affecting noncompliance that has been suggested in the literature is the relationship between stress and compliance with home therapy programs. Regardless of how a child contracts a disabling condition, the results can create caregiver and family stress. Stress is one of the most cited characteristics of families caring for a disabled child. 6,10 The stressors and hardships faced by families who have a child with a handicap or chronic illness have been well documented in the research. Altered family relationships, modifications in family activities, the burden of increased care, need for compliance with time-consuming treatment regimens, financial strains, special housing, equipment needs, possible social isolation, grieving reactions, and worrying about the child's prognosis and future potential can contribute to the stress experienced by families with disabled children. 11–14 Families of disabled children never deal with a single demand but rather with a combination of stresses that accumulate and create an abundance of demands. 15,16
Buchanan et al 17 conducted a study in 1979 involving caregivers of children with duchenne muscular dystrophy. Chronic emotional stress was reported by parents to be the most significant problem in coping with the child due to the unrelenting, constant demands of medical, physical, and emotional care required by the child. A study by Grant et al 18 in 1998 concluded that family caregivers reported the existence of significant stressors that affected their caregiving abilities. In 1999, Adams et al 19 reported on the maternal stress associated with caring for children with feeding disabilities and the implications for medical professionals when working with these mothers. Their results demonstrated that mothers of children requiring tube feeding experienced greater stress than mothers of children with disabilities who did not require tube feeding. The researchers recommended inclusion of fathers, friends, and other family members in training programs. In 2003, Vitalino et al 20 preformed a meta-analysis of the relationship between caregiving and physical health. They found a greater risk of health problems for caregivers than for non-caregivers. The authors suggested the need for a theoretical model relating caregiver stress to illness based on the results of their research.
The needs of children with disabilities such as requiring extra caregiving attention and type of disability have been investigated as to their effects on parental stress. Certain demographic characteristics such as mother's age, socioeconomic status, and number of parents in the home have also been investigated. However, these characteristics implicating stress are controversial and inconclusive. 16
Caregivers of disabled children experience greater stress levels and lead more unhealthy lifestyles than care-givers of nondisabled children. 12,14,21,22 Studies have shown that if caregivers of disabled children are not trained in stress management, they will either avoid their responsibility or will burn out or develop health problems themselves. 20 They may become ineffective and inefficient, even though they try hard to carry out their responsibility with the disabled child. It is, therefore, critical that healthcare providers assist caregivers of disabled children to become skillful stress managers. 23 Studies show that caregiver interventions such as counseling and relaxation techniques do enable caregivers to adopt healthier lifestyles for themselves and their disabled child. 24,25 Healthcare professionals must focus on how the work of the caregiver can be made less stressful. 26
Physical therapy is currently the most common intervention for children with movement disorders. 27 The benefits of physical therapy for children with disabilities are well documented. 27–30 The need for parental involvement in home therapy regimens due to the changing healthcare system is also supported in the literature. 4,31 Research has shown that families with disabled children experience greater stress levels and that parental compliance with home therapy regimens was a problem. 1,11,15–17,23 Physical therapists are responsible for ensuring that caregivers are as effective and efficient as possible in delivering home therapy interventions to their disabled children to maximize outcomes.
The purpose of this study was to determine the relationship between the level of caregiver stress and compliance with home exercise programs in caregivers of children with disabilities. Compliance was defined as how often the caregiver was instructed to follow the home program compared with how often they reported following the home program. Caring for a child with physically disabilities requires an inordinate amount of time and energy. These enormous demands coupled with the demands that exist in daily life contribute to high stress levels. This information is important to pediatric physical therapy professionals to understand that stress affects compliance with home therapy programs and determine the need for therapists to educate parents on the importance of minimizing stress levels as well as recommending ways to minimize stress. If parents of children with disabilities can reduce stress levels, compliance with home exercise programs may increase. This may improve treatment outcomes and benefit the child and all family members.
Internal review board approval was obtained from the university.
This study was designed to measure the variables of caregiver stress and compliance with a home exercise program for a child with a disability. Survey research methods were used to gather the data for this study. The compiled data were then correlated to examine the relationship between stress and compliance.
The measurement tool used to measure stress was the Short-Form of the Questionnaire on Resources and Stress. According to Friedrich et al, 32 the original Questionnaire on Resources and Stress (QRS) was developed by Holroyd in 1974. Friedrich et al developed the short form of the questionnaire in 1983, which consists of 52 true/false questions. Four factors comprise the short form of the QRS. These factors are listed in Table 1. This tool was chosen because research supports the utility of the QRS as a measure applicable to parents of children with disabilities. 32
Friedrich et al 32 conducted a study in which they correlated total scores from the short form and total scores from the original QRS. The correlation of 0.997 was obtained between the short form total scores and the QRS total scores, which suggests that the two instruments are closely related. These same researchers conducted a validation study on the short form of the QRS. Concurrent validation was established by comparing the QRS responses with responses obtained using the Beck Depression Inventory and the Marlow-Crowne Social Desirability Scale. 19 Testing done on 289 subjects yielded a Kuder-Richardson-20 reliability coefficient of 0.951. 19
A total score on the QRS and individual factor scores can be determined. Total scores on the QRS can range from 0 to 52. The higher the score, the higher the level of stress that the person is experiencing, and the lower the score, the lower the level of stress. Permission to use the short form of the QRS was obtained from one of the developers of the short form.
To measure the variable of compliance, the researchers designed a compliance survey. The form contained a series of six close-ended questions. The purpose of these questions was to determine eligibility to participate in the study and to determine the level of compliance with the child's prescribed home exercise program. The level of compliance, termed the compliance score, was determined by comparing how often the caregiver was instructed to follow the home program with how often they reported following the home program. For example, if the caregiver was instructed to perform the home program five times weekly and performed it two times, the compliance score was 2/5–6 or 40%.
A sample of convenience was obtained from the South Florida Muscular Dystrophy Association (MDA). The subjects for this study were caregivers of children diagnosed with a variety of neuromuscular disorders. A survey questionnaire was sent to 268 caregivers in South Florida who were registered with the MDA. The subjects who returned the questionnaires were included in the study if they met the following inclusion criteria: (1) the primary caregiver of a child 18 years old or younger, (2) the child had a diagnosis of a form of muscular dystrophy or a similar neuromuscular condition, (3) the caregiver had been instructed in a home exercise program by a physical therapist. Consent to participate in the study was obtained by participants completing and returning the questionnaire. Survey questionnaires were separated from envelopes when received to maintain respondent confidentiality.
The survey instruments and cover letter were mailed to the sample with a self-addressed postage-paid return envelope. The cover letter contained information about the purpose of the survey and the instructions for completion and return. Respondents were asked to return the survey within two weeks. Mailing was done by the MDA to ensure confidentiality of the clients. No follow-up mailings were done because the MDA to assure confidentiality would not release the mailing list to the researchers to ensure confidentiality and the association did not have the resources to complete a second mailing.
Frequency distributions of responses were determined for each of the questions on the compliance survey. Statistical computations were performed to determine individual factor scores and total scores for the QRS. Linear regression analysis was performed using the total QRS score as predictors to determine the level of compliance. Multiple stepwise regression analysis was performed using the factor scores as predictors to determine the level of compliance. Correlation coefficients were calculated for the four factors on the QRS and the compliance scores. Alpha was set at 0.05 level for all analyses.
Questionnaires from 80 of the 268 subjects were returned, for a response rate of 30%. Fourteen of the questionnaires were incomplete or did not meet the inclusion criteria and were omitted from the data analysis. Ninety-seven percent of the respondents reported that they were the primary caregivers of the children. The diagnoses of the children as reported by the caregivers are presented in Table 2. These percentages are representative of the South Florida MDA registered pediatric clients.
The total scores on the QRS for the subjects in this study ranged from 3 to 49. The mean QRS score for this sample was 20, with a SD of 9. Scores were divided into four intervals with ranges of 3–14, 15–26, 27–38, and 39–49. These divisions were consistent with the divisions suggested by the instrument developers. 32 Twenty-six percent of the subjects scored in the 3–14 range, 54% scored in the 15–26 range, 20% scored in the 27–38 range, and 1% scored in the 39–49 range.
Respondents reported how often they were instructed by a physical therapist to follow a home exercise program. Data are presented in Table 3. The respondents also reported how often they were able to follow the home exercise program. Of the five respondents instructed to perform the home exercise program one to two times per week, 100% reported that they performed the program one to two times per week as instructed. Of the 29 respondents instructed to perform the program three to four times per week, 41% performed the program three to four times per week as instructed, 45% performed the program one to two times per week, and 14% never preformed the program.
Of the 17 respondents instructed to perform the program five to six times per week, 12% performed the program five to six times per week as instructed, 35% performed the program three to four times per week, 29% performed the program one to two times per week, and 24% never performed the program.
Of the 15 respondents instructed to follow the program more than six times per week, 7% followed the program more than six times a week as instructed, 20% performed the program five to six times per week, 40% performed the program three to four times per week, 14% performed the program one to two times per week, and 19% never performed the program.
Overall, 34% of the respondents followed the home exercise program as instructed. Sixty-six percent reported some level of noncompliance with the home exercise program.
Linear regression analysis, using the total score on the QRS as the predictor and compliance scores as the predicted, revealed a significant relationship (F= 4.417, p< 0.039, R2 = 0.065). This suggests that a caregiver's level of compliance can be predicted by the level of stress that he or she is experiencing. The level of compliance could also be predicted based on the level of stress and prescribed frequency of the home program.
A multiple stepwise regression analysis using the four factor scores on the QRS as the predictor and compliance scores as the predicted was performed. This was performed to determine whether the individual factor scores could be used to predict compliance. The results of the multiple stepwise regression analysis revealed a significant relationship when the factors of parent and family problems (caregiver's perception of problems for him- or herself or the family) and physical incapacitation (caregiver's perceptions of limitations in the child's physical abilities and self-help skills) were included in the linear equation (F= 7.526, p< 0.001, R2 = 0.19). Twenty percent of the QRS variance can be accounted for by the factors of parent and family problems and physical incapacitation. In the sample, no outliers and no violations to normality were found.
Correlation coefficients were calculated to determine whether there was a relationship between the four factors on the QRS and the compliance score. A statistically significant relationship was found between the factor of parent and family problems and compliance score (r= 0.345, p< 0.005). This indicates that as parent and family problems increased, compliance with home exercise programs decreased. There were no significant correlations found between the other factors and the compliance score.
The purpose of this study was to determine whether there was a relationship between stress and compliance in caregivers of children with disabilities. The results reveal that there is a significant statistical relationship between stress and compliance, suggesting that, in this study, a caregiver's level of compliance can be predicted by the level of stress that he or she is experiencing. These results are consistent with those of other studies examining stress experienced by parents of children with differing disabilities 7,21 Extensive research has been done in an attempt to isolate factors influencing compliance. The factors studied have included age, race, religion, marital status, socioeconomic status, and family size. However, the degree to which these factors contribute to compliance is inconclusive. This study found that stress is another factor that decreases compliance.
The clinical implications of this study are important. If stress can be minimized, compliance with home exercise programs may increase in this population. According to Kolobe, 10 “Physical therapists working with families with a handicapped child can help to prevent unnecessary stressful situations during and throughout physical therapy services.” There are specific times in the progression of MD when there is increased stress on the family. Stress increases when there is a loss of a major functional skill such as walking, when modifications are needed to accommodate adaptive equipment for mobility, during transition to the educational environment, and during the terminal stages of the disease. 2–4 These are times that physical therapists should pay special attention and make great efforts to aid families in managing stress levels.
A significant finding in this study was that parent and family problems and physical limitations of the child were found to predict compliance with home exercise programs. As the perception of parent and family problems increased, compliance decreased. This suggests that if a caregiver exhibits problems within the family and has trouble accepting the child's physical limitations, his or her level of compliance may be low. If therapists can identify these problems, efforts can be made to ensure that the caregiver has the appropriate support and resources needed to deal with these problems. Suggestions may include introductions to support groups or diagnosis-specific groups, referrals to other healthcare professionals, and group or individual stress management sessions for caregivers.
The results of this study are based on the assumption that the caregivers answered the questions about compliance honestly. Research suggests that patient self-reports probably reflect an overestimation of compliance behavior. 33 Therefore, it is possible that the caregivers reported greater compliance with the home exercise program than was actually carried out. Further research is needed to develop standardized ways to measure compliance with treatment regimens.
Although this study used a small sample size, a strength of the study is that it sampled a specific population because all subjects had neuromuscular diseases. One of the unique characteristics of this population is that most of the conditions result in premature death. This may increase the amount of caregiver stress. It is important to consider these results when developing home programs for parents with children with disabilities. Compliance with a home exercise program is critical to children with muscular dystrophy and other debilitating diseases. As evidenced in the literature, changes in the healthcare system and lack of funding sources have shifted responsibilities from the physical therapist to the caregiver. Unfortunately, compliance with home exercise programs is a problem for many caregivers because of the demands that exist in their lives already. It is not the intent of the authors to generalize that most caregivers do not comply with home programs. However, because caregiver involvement is critical to the success of therapy, physical therapists must identify caregivers with increased stress levels and recommend ways to reduce those stress levels.
When establishing a home exercise program, physical therapists may need to consider the caregiver's needs as well as his or her day-to-day stresses to achieve the best possible outcomes. Considerations include the following: availability of personal time for the caregiver, inclusion of child or children in leisure activities, personal lifestyle, time management abilities of the caregiver, personal preferences for activities, geographic locations, means of transportation, and finances. Additionally, the caregiver's flexibility and receptiveness to identifying, acknowledging, and participating in stress reduction is an important consideration.
According to the Guide to Physical Therapist Practice, 34 “ physical therapists are involved in prevention; in promoting health, wellness, and fitness; and in performing screening activities...physical therapists conduct screenings to determine the need for primary...prevention services...referral to another practitioner. Candidates for screening generally are not patients or clients.” An example provided in the Guide to Physical Therapist Practice is “identification of lifestyle factors (e.g. stress) that may lead to increased risk for serious health problems.”
The application of the principles in the Guide to Physical Therapist Practice is twofold. Although the child is the primary patient focus, it is in the purview of physical therapists to provide or offer wellness promotion intervention to the caregivers. It is also in the purview of physical therapists to refer a caregiver to another healthcare practitioner such as a psychologist, clinical social worker, or appropriate support groups.
Suggestions for stress management reduction for caretakers appropriate to physical therapy include recommendations for regular exercise, autogenic training, imagery/visualization, breathing techniques, progressive relaxation exercises, and participation in any activity that the caregiver finds relaxing. 9,21,34–37
It is important to incorporate home programs into the regular daily routines and activities followed by the family, such as bath time, playtime, and dressing. Incorporating the home program into the daily routine might lead to better compliance and less stress for the caregiver and other family members. Additionally, emphasizing simplicity and minimizing the number of activities may also reduce stress and lead to better compliance.
The results of this study suggest that if physical therapists only instruct caregivers on how to follow a home exercise program and do not address stress levels of the caregiver, compliance may suffer. In establishing a home exercise program for children, it is critical that stress management for the caregiver be incorporated into the program. It is important that physical therapists not only treat the child but also educate and recommend ways for the caregiver to manage stress to maximize desired outcomes.
Short-Form of the Questionnaire on Resources and Stress
This questionnaire deals with your feelings about a child in your family. There are many blanks on the questionnaire. Imagine the child's name filled in on each blank. Give your honest feelings and opinions. Please answer all of the questions, even if they do not seem to apply. If it is difficult to decide True (T) or False (F), answer in terms of what you or your family feel or do most of the time. Sometimes the questions refer to problems your family does not have. Nevertheless, they can be answered True or False, even then. Please remember to answer all of the questions.
1. ____ doesn't communicate with others of his/her age. T F
2. Other members of the family have to do without things because of____ T F
3. Our family agrees on important matters. T F
4. I worry about what will happen to____ when I can no longer take care of him/her. T F
5. The constant demands for care for____ limit growth and development of someone else in our family. T F
6. ____is limited in the kind of work he/she can do to make a living. T F
7. I have accepted the fact that____ might have to live out his/her life in some special setting (e.g. institution or group home) T F
8. ____can feed himself/herself. T F
9. I have given up things I really wanted to do to care for____. T F
10. ____is able to fit into the family social group. T F
11. Sometimes I avoid taking____ out in public. T F
12. In the future, our family's social life will suffer because of increased responsibilities and financial stress. T F
13. It bothers me that____ will always be this way. T F
14. I feel tense whenever I take____ out in public. T F
15. I can go visit with friends whenever I want. T F
16. Taking____ on a vacation spoils pleasure for the whole family. T F
17. ____knows his/her own address. T F
18. The family does as many things together now as we ever did. T F
19. ____is aware who he/she is. T F
20. I get upset with the way my life is going. T F
21. Sometimes I feel very embarrassed because of____. T F
22. ____doesn't do as much as he/she should be able to do. T F
23. It is difficult to communicate with____ because he/she has difficulty understanding what is being said to him/her. T F
24. There are many places where we can enjoy ourselves as a family when____ comes along. T F
25. ____is over-protected. T F
26. ____is able to take part in games or sports. T F
27. ____has too much time on his/her hands. T F
28. I am disappointed that____ does not lead a normal life. T F
29. Time drags for____, especially free time. T F
30. ____can't pay attention very long. T F
31. It is easy for me to relax. T F
32. I worry about what will be done with____ when he/she gets older. T F
33. I get almost too tired to enjoy myself. T F
34. One of the things I appreciate about____ is his/her confidence. T F
35. There is a lot of anger and resentment in our family. T F
36. ____is able to go to the bathroom alone. T F
37. ____cannot remember what he/she says from one moment to the next. T F
38. ____can ride a bus home. T F
39. It is easy to communicate with____. T F
40. The constant demands to care for____ limit my growth and development. T F
41. ____accepts himself/herself as a person. T F
42. I feel sad when I think of____. T F
43. I often worry about what will happen to____ when I no longer can take care of him/her. T F
44. People can't understand what____ tries to say. T F
45. Caring for____puts a strain on me. T F
46. Members of our family get to do the same kinds of things other families do. T F
47. ____will always be a problem to us. T F
48. ____is able to express his/her feelings to others. T F
49. ____has to use a bedpan or diaper. T F
50. I rarely feel blue. T F
51. I am worried much of the time. T F
52. ____can walk without help. T F
Please circle the correct response and be as honest as possible when responding.
1. Are you the primary caregiver of the child?
2. What type of muscular dystrophy is your child diagnosed with?
Duchenne Becker Spinal Muscular Atrophy Other_________________
3. Is your child currently following a physical therapy home exercise program? If, yes, proceed to answer questions 4 and 5. If, no, continue to question 6.
4. How often were you instructed by the therapist to follow the home exercise program?
1–2 times per week
3–4 times per week
5–6 times per week
greater than 6 times per week
5. How often were you able to carry out the home exercise program? never
1–2 times per week
3–4 times per week
5–6 times per week
greater than 6 times per week
6. Has your child followed a physical therapy home exercise program in the past?
7. How often were you instructed by the therapist to follow the home exercise program?
1–2 times per week
3–4 times per week
5–6 times per week
greater than 6 times per week
8. How often were you able to carry out the home exercise program? never
1–2 times per week
3–4 times per week
5–6 times per week
greater than 6 times per week
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© 2004 Lippincott Williams & Wilkins, Inc.